Pictures of the J-tube...Don't look if you are squeamish!

I have to clean around this a couple times a day...the two scabby looking holes underneath are where his drains were.

If you look in the middle of Paul's incision you can see a stitch coming up through his skin...not sure where it is coming from...he had staples in his incision.  It kind of looks like a bee stinger...I guess the doc will remove it Tuesday...

And the saga continues...

We got a phone call at 7:00 this morning.  It was a Home Health nurse calling to let us know that she had received an emergency message that she needed to come out first thing this morning to draw some blood.  She told Paul that his glucose numbers were very high and they needed to see what was going on.  His glucose numbers? Nobody said anything about glucose last night.

Paul told the nurse about what happened last night.  He told her that we had been to the ER and they had drawn blood there.  He told her that they said all his numbers were fine.  She told him that she would call the hospital to see if they would give her the lab results and then call us back.

At 7:30 the nurse called back.  This time I spoke with her.  She said that she did not need to come out because the hospital gave her Paul's lab numbers and said that everything was fine (including the glucose number).  Evidently, his blood sample that was taken yesterday got really messed up....

The nurse agreed with us that this whole incident should have been handled differently.   In theory, they should have come back yesterday after they had the outrageous numbers and drew a new blood sample.   Ironically, we still don't know who called us.  The lab told the nurse the only people they told was Dr. M's office...Dr. M's on-call didn't know anything about it...

I really wish that Home Health would have a dedicated nurse coming to our house.  We have seen four different nurses this past week.  We really liked two of the four.   The one yesterday was nice, but  because she was in a hurry to get Paul's blood, she did not take the time necessary to get a good blood draw.  She brought her kids with her because she didn't have a babysitter.   She had put some Cathflo in to his PIIC line because there was a blockage not allowing the blood to flow out.  Solutions could go in, but nothing could come out.  I won't explain all the reasons for this...too much technical stuff... anyway, she left for a couple of hours and came back to see if it worked. She was able to get a blood draw when she came back.  So, she hurried and took the blood and left.

As we have discovered from several nurses, PIIC lines can be "iffy" to get a good blood draw.  Especially since the two ports come out at one spot (Paul has his TPN going through one of the lines at all times).  They said usually you get a better draw if it is from a vein...

Oh well...he is alive and doing well!  I am going to get him a milk shake today and see how that works!

Never a dull moment...just got home from the ER

At approximately 6:00 tonight I got a phone call from some guy.  He asks me if my husband is a patient of Dr. M.  I tell him yes.  He says in a panicked voice, something about calling for Dr. M's office.  He proceeds to tell me that there was a problem with the blood labs Paul had drawn today (a Home Health nurse draws his blood twice a week because he is on TPN).

The guy tells me Paul's potassium level was extremely high and I needed to get him to the ER immediately! I asked him which hospital to take him to.  He said the closest one.  He said this is very serious because most people that have this high of numbers would probably be dead.  He then proceeded to tell me that he is not sure what they will do, but that Paul will probably need to be on dialysis.   I was really freaking out at this point...I ask the guy should I call 911 and have an ambulance take him.  He asks me, "Is he breathing"?  "Does he seem okay?"  At this point I felt like yelling at the guy, of course he is breathing you idiot,  he just finished some chicken noodle soup!  Seriously, if he wasn't breathing don't you think I would have called 911 before now?

Anyway, I look over at Paul who has this puzzled look on his face, like what is going on...I hang up the phone and proceed to tell Paul that we need to get him to the ER immediately!  He looks at me calmly and asks why?  I said, "This guy just told me that your potassium levels were way too high and you need immediate attention" (I didn't tell him about the dialysis part or that he should be dead).   

Paul says other than my heart has been racing a bit, I feel fine.  I was in panic mode and he could tell.  He told me to calm down that he really wasn't feeling too bad.  I called some friends to help out with the kids and told him to get in the car.  He told me he needed to go to the bathroom first.  I was thinking, how can you go pee at a time like this?   Didn't he know he was lucky to be alive at this moment?

Our friend came over and could see that I was in no shape to be driving my husband to the ER.  After all, I had just been told that my husband is lucky to be alive and in my mind he was a time bomb waiting to explode.  So, he drove us to the closest hospital.

We arrive at the ER and I started to tell them about the phone call.  They got Paul back quickly and started checking him immediately.  They hooked him up to an EKG, drew more blood to check his potassium levels, and monitored his blood pressure.  His heart rate was ranging from the high 90's to low 100's which is high for Paul.  He usually runs about 60's to 70's.  His blood pressure was a bit high as well.

I started to bawl.  This sweet nurse took me out and got me a drink.  She told me not to worry that everything would be okay.  All I could think was that my poor husband was going to have to have dialysis...

In the mean time, I had called my sister, who had had potassium issues in the past, to ask her what she thought.  She told me that it could have been an error because that had happened to her.  She said something about the blood cells opening and spilling extra potassium  (evidently there can be errors because of this on potassium levels-this can happen if the blood tube gets shaken up.)

Thankfully, my sister was right.  The nurse came in and told us the blood work had come back and his potassium levels were just fine.  She told us that they should not have panicked us and just done a retest on the levels.  Evidently, she said the same thing as my sister, this can happen with potassium levels.  We were so relieved!

The ER doctor came back in to tell us the same news.  He told us that since our doctor is out of town, he called the on-call doctor filling in to let him know the update on Paul.  He told him that Paul was at the ER because they had re-tested his potassium levels and they were fine.  This doctor did not even know there was an issue to begin with.  He knew nothing about Paul's potassium levels.   So the ER doctor was stumped as to who called us... so were we... I thought the guy had said he was the on-call doctor calling.

We asked the doctor why Paul's heart rate is running higher than normal.  He said he didn't know, but that he should be okay.  Could be all the sugar he is getting in the TPN. We will see our doctor on Tuesday.

So now, the mystery begins.  We don't know who called us.  The ER doctor was hoping they hadn't called the wrong patient...that doesn't sound too good.  What if some poor guy is out there with high potassium levels and doesn't even know it!

As for me, I am thinking it was someone calling from the lab or from Home Health... Whoever it was, they really need to learn how to tell people that they need to get their potassium levels checked.   Did this person not know that there can be errors?  How about just telling the person they need to go to the ER to have their potassium re-checked to make sure that it is okay, because it may be a little high.

Thanks to our friends who came to hang out with us at the ER.  It made it much more interesting!   I am sure you feel a lot more educated about potassium levels, as do we! 

Sorry, due to the holiday we haven't been in touch...

Are you kidding me?  We finally got a phone call from a dietician yesterday afternoon.  Yep, Paul was sent home from the hospital last Thursday with no real information about what to eat and what not to eat or any real advice at all.  He was told by his doctor this is just time for experimenting...try whatever you feel like you can handle.  He told Paul not to stress about eating too much because the TPN would give him his nutrition.

I don't blame the doctor for not giving us more information, but I do feel like the dieticians should have met with us.  The only reason why I knew what "dumping syndrome" is because I did research on my own.  Through that research I also discovered that  Paul should drink either 30 minutes before or after a meal (but not during), that he should be eating six to eight small meals a day, eat high protein, eat very little sugars, don't eat fresh fruits and vegetables, and a few other dietary guidelines.

Paul had a dietician assigned to him in the hospital.  He is the one who determined how much to give him in his J-tube feedings  and PPN.  He was in the hospital for 11 days.  The dietician met with him personally one time to tell him they were going to change the J-tube feedings.  I never met him.   Don't you think in the 11 days at the hospital, someone could have met with us to tell us what we needed to know about his dietary needs?

Paul had been home for five days before someone finally called.  It was a dietician from the Home Health company we are using.  She asked him how he was doing.  He told her that we were a little frustrated because no one had really bothered to give us much information about his dietary needs or address any concerns we might have about it.  That is when she told him that due to the holiday, no one was able to contact him sooner.   

Sorry, not trying to sound too cynical here, but cancer doesn't take a holiday!  I have noticed that it is quite difficult to get the help you need during the holiday season.  Granted, the hospital was very busy, which I am sure does not help the staff who is working.  Truthfully, the only people I really noticed that didn't give us much attention or help us was the dieticians and the respiratory team (oh yes, and that one nurse who totally neglected Paul in his time of need).

Paul came home with some lung congestion that was affecting his oxygen levels...fortunately our Home Health nurse detected that and told us the breathing exercises he needed to be doing to clear his left lung.  Thank heavens it worked!!!  Ironically, no one caught it at the hospital even though his oxygen levels were about 92.   In addition, she explained the redness and swelling in his left arm was due to phlebitis.  We had asked the nurse earlier that day about it and she just said it was nothing.   The Home Health nurse told us to use heat compresses on it.  I wish the nurse at the hospital would have told us to do that...she just looked at it like she didn't know what it was.  Fortunately, the phlebitis has also been clearing up on its own....it did look pretty scary for a while (the redness was moving up his arm).

All in all, I am grateful for the care Paul received while in the hospital.  I have realized the value of a great nurse and the CNA's who help them.  They are definitely the patients advocate!

Adjusting nicely at home...

It has been so nice having Paul home.  Christmas was great!  He is doing much better at home.  He has only thrown up one time since he has been home....that was because he ate too quickly.  He has to eat really slowly (little bits at a time).  I have managed to get around 1500 calories a day in him for the past 2 days.  Obviously, we need to get him to more like 2800-3000 calories a day to maintain his current weight at 181 pounds (then we can get him off of TPN).  He weighed 192 lbs. the day of his surgery.  He is on TPN 24 hours a day...this helps him get the nutrition he needs.  He needs to be as strong as possible for the upcoming chemo!

I feel like I am becoming a pretty decent nurse...I have to flush his J-tube twice a day...I am getting really good at flushing out his PIIC lines...attaching his TPN...changing his dressings around his J-tube, etc...Actually, it isn't really that hard, just can be a little time consuming.  It is kind of a process to get him showered!

We are so grateful for all the help that we have received from family and friends.  We truly have been blessed!  We love you all!

Paul is home!!!

So, they stopped the J-tube feedings yesterday and started a PPN (partial nutrition through IV).  That helped tremendously!  He is not having the nausea and vomiting issue like he was...

They put in his PICC line today and radiology had him drink the lovely contrast to see how he is doing.  They said he has some slow motility going on in his intestines.  Could be because of pain meds...anyway this could be another reason his body is rejecting the tube feeds into his intestine.  In addition, you could see that his intestines looked swollen.  He just needs time for the inflammation to go down... We will slowly be working on him eating each day.  Eventually, we need to get to the point that he can eat enough to sustain himself without the help of TPN or tube feedings.  Right now, we just need to focus on him getting strong enough to face chemo and radiation next month...that is where the TPN will help us!

Anyway, we were able to bring him home this afternoon.  He is so happy to be home.  The nurse came by tonight and helped us hook him up to his TPN and showed us how to take care of "things".  I am glad that another nurse is coming back tomorrow night to make sure we really know what we are doing! 

The girls were so excited to see their dad!  It was a great Christmas present for me to be able to bring him home.  He is sitting in his new recliner (early Christmas present) and watching television...it is so nice to see him sitting there!!!

Well, I guess it's time for a PICC line...

The doctor has finally decided that it is time to change the way Paul is receiving his nutrition.  The J-tube is just not working out so well.  He keeps vomiting.  He still gets nauseous and has a little bit of vomiting when they turn off the feeding, but it could be some residual effect...who knows?  So, now it is a different plan.  The will be putting in a PICC line tomorrow.  He will be receiving TPN (Total Parenteral Nutrition) through the PICC line.  A benefit to this happening is that he might come home tomorrow evening or Friday.  I think it would lift his spirits a lot to be home for Christmas.  He has not been his normal, happy self.  He is just so depleted...

I really hope this helps Paul.  He has been suffering so much.  I hate to see him go through this...

When it rains it pours!

I am home today with a sick child.  She was up throwing up all night...therefore I was up all night...feeling a bit tired today.  She is still not feeling good poor kid. Luckily, our daughter, had today off work.  She is up hanging out at the hospital with her dad today.

Paul was doing better yesterday...started not feeling good last evening...and then started the nausea/vomiting thing quite a bit this morning.  They are changing the formula going into his J-tube.  It is such a catch-22 because you need to eat and get nutrition to survive, but the food going into his intestine is making him throw up!  With time his body is supposed to adjust...just how much time is the question.  Just got a call from our daughter, he is not doing well at all.  Constant nausea and vomiting!

It is so hard to watch the one you love so much suffer...I have found though, while the suffering increases, the help and love have been increasing at the same time.  I came home from the hospital yesterday to discover a nice clean house.  Santa's elves were hard at work in my behalf!  I can never adequately thank those elves...it is so nice not to have to worry about vacuuming, dusting, scrubbing toilets, etc... at the present moment! My girls still think that Chippy, their elf, was the one that provided all the magic!

Meet Chippy, our Elf on a Shelf!   The girls get so excited to see where he is going to be next!

A better day today...

Paul is doing quite a bit better today.  He has not thrown up since about 5:00 yesterday.  He is back in intermediate care because the nurse he had yesterday was not taking very good care of him.  There were so many things that could have helped him yesterday to do better and the nurse just did not know what he was doing.  Anyway, long story short, I met with the charge nurse yesterday about 5:00 and told her everything that happened.  She heard everything I told her and agreed that he needed better care.  They moved him about 7:00 last night.  They are giving him his meds on time which is helping.   I know that he still would have had problems yesterday.  I also know it would have been better if he had been receiving his meds as prescribed.  They did a CT scan last night just to make sure everything looked good...they did not see any problems...which is good.

I am sure that we have a very long road ahead of us.  I also know that he could get sick again any time.  It is a scary process...  We appreciate all the prayers and positive thoughts coming our way.  We also appreciate all the help we have been receiving.  There have been so many people doing so many kind deeds! People have just shown up or called right when I needed them most, fed me dinner when I got home from the hospital, taken my garbage can out and brought it back, shoveled my driveway, sent me text messages of encouragement and love, babysitting our dog Zoey, and so many other kind things. It has helped so much having people watch my children for me...my children are actually very happy because they have been playing with friends.  In fact, they usually don't want to come home with me! I apologize to those I have not talked to personally that have sent me messages and called.  I know that you are there for us too!   I can't believe how amazing all our friends and family have been. Thank you does not adequately express how we feel, but I don't know how else to say it!  We love you all!

Paul is not doing well today...please include him in your prayers!

Paul has been throwing up all morning.  The Zofran is not helping!  This is so hard to watch...he is running a fever and is having nausea & vomiting.  I can only imagine the pain...The doctor said that this is actually pretty normal to have happen.  In fact, he said it happens in most cases.  He just didn't think it was going to happen to Paul because he had been doing so well.  They are going to get a CT scan this morning just make to sure that everything is okay inside.  They are also going to check him for a bacteria (c-diffuse is what he called it, I think ) that can cause this.  I just can't imagine how bad this must hurt to throw up with your insides trying to heal!

Poor guy is in major pain.  His back is really hurting now where he had his fusion last year.  I hate this...it is very hard.  My sister is coming up to see us and is bringing a freezer gel pack that we can put on his back.  That should help a little with his back.

They just started an IV with Fenergan.  I really hope this helps!  I just feel so helpless...I wish I could help him more...Oh great, now they just said his IV is probably plugged.  They may have to put in a new IV line.  Actually, that shouldn't surprise me since he has had that line in for almost a week.... They just gave him a dose of liquid Lortab in his feeding tube.  They are trying to get him off of the epideral today.

Can I just say (in a loud screaming voice) Cancer SUCKS!!!!!!!!!!!!!!!  It is mean and evil!

Hiccups are literally a pain!

Paul has been getting the hiccups and they are very painful!  He tried some chicken broth last night and it really did not agree with him.  He got very nauseated and then the hiccups.  They gave him Zofran and a shot of Toradol...they seemed to help.   He had the hiccups some more today.  The doctor said it is because his diaphragm is irritated from the surgery.

Today, the doctor changed his restrictions again.  He can now have as much clear liquids as he wants.  He really liked the Italian ice!  Tomorrow they will start him on regular liquids (yogurt, pudding, ice cream, etc.) to see how he does.  I hope that he is able to tolerate it...this could become a long process...lots of trial and error.  It is a good thing he is getting nutrition from his feeding tube.

Speaking of feeding tube...the food that goes in there does not smell the best.  He was sitting up today getting his sponge bath and one of the caps on the tube opened up.  The food started dripping out on his leg...we both were really glad after we smelled it that he doesn't have to eat it through his mouth!

Pictures

Paul managed a smile even with the NG tube down his throat!

Paul still smiling even though he has been through so much!  Love that man!

The beautiful yellow stuff that is in the bag is his food...yep, it looks like pureed mac & cheese!  That is the food that goes into his J-tube on the left side of his abdomen.

WARNING!!! NEXT PHOTO SHOWS HIS INCISION...IF YOU GET GROSSED OUT EASILY...DON'T LOOK!!!!!!!!!

Lovely tube drains...underneath those is his J-tube...if you look closely, you can see the yellow food going in the tube...

He is no longer in intermediate care!

Paul called me tonight to let me know they have moved him to a new room.  He is no longer in intermediate care...he is in a regular hospital room!  We are making progress!

The next step is to get his epideral out.  Once the epideral is out, he will be taken off the oxygen.  We think they are going to attempt to give him oral pain meds tomorrow and see how he does.  If he does well, they will take out the epideral. 

The epideral has been a blessing for him.  He has had minimal pain.  So far this surgery has been much easier than his spinal fusion last year.    I hope I don't jinx him by saying that!

Mostly good news...

They took Paul's NG tube out this morning!  They checked him for leaks in the radiation department this morning ( I know it sounds funny-but 25 % of patients have leaks) and did not see anything...so they took the tube out of his nose.  He is so happy to have that thing gone!

He has been having nausea today.  Yep, you can have nausea without having a stomach...and we are also discovering that you can feel hungry as well!  They have increased the amount of food he is getting in his J-tube and will let him have two ounces of liquid an hour instead of just two ice chips an hour.  He really likes apple juice flavored ice chips!

The doctor met with us today and told us that the cancer was deeper and bigger in his stomach than they had originally thought (took up about half his stomach), but they tested 31 lymph nodes and there was no cancer present.  His final cancer staging is T3N0, which is stage IIa.  We are going to beat this!

Are you serious???

Paul's prescription for his Omeprazole (meds for his reflux) was expired.  He contacted his doctor in September 2011, to request a renewal.  They told him they would renew it for a month, but he had to come in and see the doctor to get it renewed for longer.  He went in for his appointment in October.  At that time he discussed some issues he had been having with his stomach.  He told the P.A. that he was feeling like his ulcer might be back and that he'd had a dry cough for about a month.  He also told him he just wasn't feeling quite right.  He was feeling full very quickly when he was eating and he had been having little bouts of nausea.  Nothing too major, though.  The P.A. told him he needed an endoscopy to check for ulcers again and that he probably needed his esophagus stretched again as well.

Paul had an endoscopy on Monday, November 21, 2011.  The doctor met with us after to discuss his findings.  He told us that Paul had an ulcer with inflammation and a little nodule by it.  They were doing biopsies to see if the H. Pylori bacteria was present again (he'd been treated for the bacteria about three years ago that had caused two ulcers). He also told us that he had stretched his esophagus. He didn't seem overly concerned or anything.  So we didn't think much of it.

We received a phone call on November 28th at 5:00 p.m.  The P.A. was calling to talk to Paul.  He told Paul  that he hated to tell him the bad news over the phone, but his biopsy had revealed he had adenocarcinoma in his stomach (stomach cancer).  They had already set up appointments for an endoscopy with ultrasound, an oncologist, and a surgeon.  He had already been scheduled for a CT the next day, because his doctor had wanted to make sure his blood pressure meds were not causing pancreatitis.

Paul had his CT on November 29th, and then we went to LDS Hospital on December 1st, for his internal ultrasound (via endoscopy).  We received some good news at this appointment.  The doctor told us that the CT scan looked good (no spreading of cancer) and that the ultrasound revealed the same thing.  He said the cancer was in his muscle layer, but it had not spread to lymph nodes.  He staged his cancer as T2N0 which is stage 1b cancer.

We went to the oncologist on December 6th.  He told us he wanted to do a PET scan just to make sure tthe cancer had not spread.  We were then scheduled for the scan on December 8th at 1:00.  We had an appointment already scheduled with the surgeon at 10 a.m. on the 8th. He told us to keep our appointment.  He said if the PET scan revealed anything different than what the CT scan showed, he would let us know, and that we might have to do chemo and radiation before surgery.  He told us he could operate the following week on Monday or Wednesday.  We chose Monday.  We wanted this nasty disease gone ASAP!

On Monday, December 12, 2011, exactly two weeks after we found out Paul had stomach cancer, he had a gastrectomy (complete stomach removal).  The surgery lasted for five long hours!  He did well during the surgery.  The best news that came from the surgery was that the cancer margin came back clean.  The doctor said they were concerned because the cancer was located close to his esophagus.  He said that we were very fortunate because if it had been in the esophagus they would have had to leave it and hope that the chemo and radiation would get it.  We also found out just before the surgery the PET scan had revealed the same thing as the CT scan.  The cancer had not spread.  Only the stomach was involved!  We will still have to do chemo and radiation in about 4 - 6 weeks.  But now we know that we have a fighting chance!!!